View Full Version : New to group
01-20-2005, 01:11 AM
Hi! My name is Misty and I have a 3 year old miracle. Her name is Holly. She was born with Escobar Syndrome with diaphramtic hernia and eventration(she only has a left lung.) She wasn't expected to ever come home. She loves to prove the doctors wrong. Â*Currently we are having speech problems. Her vocal folds aren't working and her nasal passage doesn't close like it is suppose to, and the roof of her mouth is very high. The syndrome she has effects bone and muscle. So she is having problems getting her tongue where it needs to go to make certain sounds. We are going to Ohio to see Dr Cotton in Feb. Have any of you seen him? Or have any of you had speech delays and what did you as a parent do to help. Â*Thanks
01-20-2005, 05:52 AM
Welcome to the boards! You will find there are a lot of us here that have seen Dr Cotton. Many have him as their primary ENT, while some of us have seen him on a consulting basis. My daughter has not suffered from anything like yours, so I can't speak to the other issues.
01-20-2005, 08:42 AM
Hi Misty! Welcome to the group. I am glad your little one is also able to prove doctors wrong - many kids here do the same. They are all miracles.
My son has a neuromuscular disease and has the same issue with tongue placement. Unfortunately, because of our state's wonderful http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sarcasm.gif EI program, he has received little speech therapy. On the other hand, he now starting to make "la" and "na" sounds, which is a great obstacle as far as tongue placement goes.
Like Clare said, many kids here see Dr. Cotton. I have no experience with him, but if my son had issues that he could resolve, I would definitely try to see him. He is the man to see. I hope he can help Holly.
Take care, Amanda
01-20-2005, 02:47 PM
Welcome. Our issues are different than ours, but I did want to welcome you. We have not seen Dr. Cotton, but he seems to be the best one from what everyone on here says. Please keep us posted on how your little one is doing.
Welcome to the greatest board in the world. I am an adoptive mom to 3 medically fragile, special needs, miracles.
We also foster 2 other medically fagile little ones.
Our Miracles have many and various issues. Feeding tubes, Trach, legally blind, oral and sensory issues, almost deaf, Hydrocephalus, Microcephaly, C.P., Oxygen dependent, wheel chair dependent, etc.
They told us Kimberly would probably not live more than a few months and she celebrated her 7th birthday this past Dec. 5th. She has proven that miracles still happen several times.
2 of ours were botn at 23 weeks weighing 21 and 22 ounces.
Please feel free to contact me at any time. I am here for you as are all the other wonderful people on this board. God Bless your for loving and caring for one of HIS special Angels.
Love to all,
Judy and the 5 very special Angels http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
01-21-2005, 08:57 AM
Welcome, Misty! You have found a fantastic group of people! You will be at home here!
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